Tag Archives: Diatribe

The village kids call him ‘Alto’. The Spanish translation is tall. But Jesse is much taller than just to play basketball. Jesse is much taller because when many people might shy away from this type of opportunity, Jesse embraced it.

Embraced it indeed.

Being in a village called Juan Dolio is not exactly the quick pace of New York. This village, on the southern coast of the Dominican Republic, is far away…..from……well….everything. Where coconut palm trees grow in the sand and the water is bluer than we know. But also where 99% of the villagers show up in clothes that are torn and without shoes; seeking medical care coming from houses with clay floors. In 1998 Hurricane Georges destroyed the entire village. Little was left to even rebuild to the little resort community it once was.

Jesse is part of a hand-picked group offered to come to this area to help. It’s not mandatory and I’m sure Jesse would rather be in his apartment back in Buffalo where he attends school and will graduate in June with his RN BSN. But Jesse is on a mission. A mission with Missionary Score International to help others, including medical care, and that’s where Jesse comes in. He is in that field and is very helpful to this small community where medical care is a huge luxury……..of need.

I have known Jesse for some time. He’s not actually one of my kids, but he is one of all of our kids. One of our kids with type 1 diabetes making a difference. He is your regular 23 year-old and does what many young man his age like to do. He’s not perfect; who was at age twenty-three (surely not me)? But Jesse is also one of those young men who act beyond his years and quickly steps-up when someone needs help. Having T1D since age 9 makes you aware pretty quickly in life that fair is a word that can surely be/work against you. Jesse would have none of it. Not only does he live life to the fullest, he gives back when so many more say, I’m just too busy.

So for this week he gives of his time, voluntarily, to help those who are less fortunate than he, and who live life as only he may have read about when he was younger. People who have less and need medical care more. And even when he is done for the day, he finds time for a basketball game with the village kids. Where he allows the six who face him alone, to score ten quick points before he beats them 11-10.

Jesse understands fun, work, volunteerism, giving, enjoying, long hours, quick rests, laughter, and balancing diabetes; and many, including myself, are very proud of his efforts. A tall order for some, but not for a young man the village kids……..call ‘Alto’.

Kelly Close’s DiaTribe published a very interesting finding based on a recent study in Diabetes Care……it states (according to DiaTribe);“……..more US children and adolescents have been diagnosed with type 1 diabetes in recent years: the disease’s annual prevalence in a large, insured population increased 53% between 2002 and 2013, from 1.48 to 2.33 cases per 1,000 people. The study used data from insurance companies to survey the rate of diabetes in ~10 million US children and adolescents younger than 18 years old, so it does not tell us how diagnoses of type 1 may be changing in adults. It is not clear why type 1 diagnoses are increasing so rapidly.”

Now if you look at those stats a little more closely, it used to be that 1.48 cases per 1,000 were diagnosed with type 1 diabetes (T1D), and the new study shows that it is now 2.33. Now in dealing with percentages, that means that almost an additional person per 1,000 cases is being diagnosed with T1D. THAT’s alarming.

Click the link and read her article; pay close attention to her conclusion. It will shake your cage and reinforce what many have stated for some time. And if you do not follow her, you should. Kelly has an incredible talent to call things as they are, usually with little sweetener (pun intended).

If you do not know Kelly, I can tell you that she is a shoot-from-the-hip kind of writer; and probably one of the most knowledgeable people on what is happening in our diabetes world. Little, if anything, gets by her and/or her team. She has taken her battle with diabetes (of over 25 years) and her desire to know every/any-thing she can, and after she ferociously learns for herself, she graciously shares with the world what she finds.

Kelly is also the same person who meets you with a warm smile (one of the biggest smiles I know) when you see her at one of the many conferences dealing with diabetes, taking place annually. It’s not ‘unusual’ to see her and/or members of her team running from one session to another to capture, for us, what is going on.

Diabetes. She writes about all aspects of diabetes. ALL. You may not agree with everything that is written, and truth be known, you shouldn’t. I have often felt that if you want to be amused, you read the comics; if you want to learn, read writers who challenge you to think and to learn for yourself. Writers should open a dialogue; and Kelly is the master.

So if you are always trying to figure out what is real and what is not; what are facts and what is rhetoric; what is the truth and what is mere fabrication….give yourself a New Year’s gift and follow Kelly’s DiaTribe more closely. In a few months you will feel more educated, and in the know, about what so many merely think they know.

Sometimes things are done that just leave me scratching my head. Today is such a day. The best part is that you can do something about it, and to be honest–this just makes no sense to me whatsoever.

The FDA is planning a series of ‘patient meetings’ over the next five years to better understand specific diseases. It astounds me, and is a glaring mis-step, that diabetes is not on that list. That’s correct. Diabetes will not be included. My guess is that diabetes is not on the list (and my guess only) as I look at the list of the other diseases included is that someone at the FDA believes that they have all the necessary information needed to make decisions moving forward.

This is a mistake.

In the Diatribe sponsored petition, they state;“We need to tell our story to the FDA: about the need for accurate strips, more physiologic insulin, a broader range of drugs, and the Artificial Pancreas.”

These issues should be listed as very important to all of us and if you add Ed Damiano’s Bionic Pancreas (which is somewhat different from the AP utilizing both insulin AND glucagon) and those many organizations looking at biological cure possibilities that may, and will absolutely, be up against hurdles in the FDA process; everyone who has a loved one with diabetes, or has diabetes, should sign this petition.

We need to be given the opportunity for not only us as the general public; but experts like Ed Damiano, Dr. Camillo Ricordi, Dr. Aaron Kowalski, Dr. Bernhard Hering, and so many more to join together to be heard and stress the importance of both treatment options and cure related focus that needs to be addressed by the FDA in a manner that is both expeditious and comprehensive in scope.

The examples given in the Diatribe (owned and operated by DOC’s own and wonderful, Kelly Close) petition are only but a few issues in the ever-changing diabetes landscape that will be facing the FDA over the next five years, we cannot; and should not; allow our collective voices to go unheard.

If diabetes has any importance to you whatsoever (and it is my hope that just reading that sentence annoyed you because we all know that it is hugely important to all of us) in better management tools, medications, insulins, and cure related research—I urge you to sign this petition.

This is crucial for all of us to join together. Type 1; type 2; LADA, Gestational and any other form of diabetes you know of; our voices MUST BE HEARD.

Under the comment section of the petition, I wrote:With so many aspects of diabetes that will be before the FDA in the near future; it is too crucial to be detached from those who are in the know about matters of treatment and potential cures. It makes no sense to omit those active in this disease state to assist the FDA. The diabetes community should be included in the upcoming FDA ‘patient meetings’.

If we can not convince the FDA how crucial it is that our voices be heard; the silence will be deafening. Period.

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Disclaimer

This is my blog. I am not a medical professional and any medical written word is read somewhere else and will be credited accordingly. There is no substitution for YOUR medical team. I am not paid for what is written on this blog.